Life-Threatening Malnutrition in Very Severe ME/CFS

Purpose: To highlight the nutritional challenges faced by patients with very severe Myalgic Encephalomyelitis (ME/CFS), emphasizing the need for timely medical intervention and raising awareness among healthcare professionals.

Key Points:

1. Causes of Nutritional Challenges:
   • Severe debilitation making eating and drinking exhausting.
   • Dysphagia (difficulty swallowing), gastroparesis, malabsorption, and Mast Cell Activation Disorder (MCAD).
   • Lack of recognition by healthcare professionals of the organic nature of these issues.
2. Delays in Tube Feeding:
   • Patients often face significant delays in receiving artificial nutrition (enteral or parenteral feeding), leading to life-threatening malnutrition.
   • Psychological misdiagnoses (e.g., eating disorders) often overshadow clinical evidence, delaying critical care.
3. Case Studies:
   • Five anonymized case reports illustrate systemic failures:
     • Severe malnutrition and dehydration.
     • Delay in initiating tube feeding despite clinical need.
     • Emotional distress due to misdiagnoses and inappropriate psychiatric involvement.
4. Recommendations for Improvement:
   • Early recognition of nutritional problems in severe ME/CFS patients.
   • Allocating specialized Home Enteral Nutrition Service (HENS) dieticians to provide tailored care and minimize hospital admissions.
   • Implementation of community-based NGT re-siting protocols to reduce hospital visits.
   • Greater medical education on the organic nature of severe ME/CFS and its nutritional complications.

Target Audience: Healthcare providers, dieticians, caregivers, and policymakers dedicated to improving care for severe ME/CFS patients.

Overall Outcome: The document underscores the urgent need for systemic changes in how healthcare professionals address nutritional issues in severe ME/CFS. It advocates for improved education, early intervention, and patient-centered care to prevent life-threatening malnutrition and enhance quality of life.